regarding my daughter

Hi Amit
Dr Mathur also gave us the same time frame. His charges varies according to the blood group. My son`s blood group is A -ve and he charged us 2.8 lakhs. Recently someone contacted us from Dubai.  Dr Mathur had also given them a time frame of 1 1/2 years, But the charges were 3.5 lakhs and if the treatment exceeded the given time frame he would charge more.

So far we have completed 8 months of Rodex, and Hassan still needs to be transfused. So I cannot advice you to start Rodex, but Micky will tell you otherwise. It is so uncanny that his MCV and MCH are constantly increasing but it is not reflected on his hb. This time we went in after 9 weeks(64 days) to be exact. His hb was 5.03, his mcv-69.6 and his mch-31.
 
A question for all. Can the transfused blood last for 64 days? especially when it was nearing expiry.Because my doc said his mcv and mch was high because of the adult blood and had nothing to do with Rodex. I am continuing with Rodex but I will not wait for his hb to drop this low ever again.
Take care
maha

Hi Maha,

I am a bit upset after reading your post,why are you keeping hassan on such low hb? don't you think it would effect his growth and it can definitely lead to bone deformation,you are a very good mom ,doing everything possible for your kid, but plz think about it.

My personal opinion,when zainab was diagnosed,and she started transfusing,i was always looking for ways to stop transfusions some how,with one way or another, i was always searching for medicines or treatments which can maintain her hb and stop transfusions,it was untill i joined this site, after joining this site i started believing that thalassemia is a manageable disorder, and transfusing a child is not as bad as i used to think,i started looking towards transfusions as a source of happy and healthy life for my daughter,i know continuous transfusions lead to iron overload,but fortunately there are very good chelators available,you just have to be COMPLIANT.Which is what i am trying so hard to do,i am giving zainab IP6 and wheatgrass, but no claimed treatments for my daughter anymore,NO WAY,i've never seen any results,positivie results coming out of them,unless you talk about hbF inducers or transplantation,although they have their side effects too but at least they are known world wide and their authenticity is confirmed.

What do you guys think ?

ZAINI.

Hi Zaini
Common sense at times does not prevail. When I decided to start Rodex all I could see was my sons hand which was looking like a  club(an aftermath of transfusion). There are five doctors in my immediate family( none in homeopathy), and I myself am a university rank holder in business administration. Everyone tried to talk me out of it, but I was adamant. I started reading about homeopathy and how it works.( Infact if I was to sit for a BHMS I would probably pass in flying colours.)I had an answer to all their arguments. I always looked up to Micky. It was like as long as his son is doing well Hassan would also do well. But now I am scared and confused. Its like being caught in two minds. Should I continue or not? I know what all your answers would be so I don`t ask the question.
My paediatrician has directed us to a thal center in Al Khobar. I didn`t even know it existed. I hope Hassan gets good management there.
Regards
MAHA

Maha,

Please read my post that I wrote for Micky and try to understand some implication of thalassemia.

Don't worry we all sometimes make wrong decisions. Please keep us posted how Hassan is doing after transfusion.

Take care.

Maha,

It is perfectly understandable that you want to explore every avenue for your child's care. But as of yet, the only cure for majors is bone marrow transplant. These small changes in Hb that fetal hemoglobin inducers provide are not sufficient and even the success of the Algerian study that used hydroxyurea to boost the Hb of majors, resulted in a recommendation that this may be an alternative when regular treatment is prohibitive due to costs, as hydroxyurea is relatively cheap. This is the same thinking Dr Modha has used with his iron chelation formula. It is most likely not sufficient to replace chelation, but for those getting nothing, it can be of some help. However, when proper treatment is available and the parents can afford it, there is no choice but to use it. I do believe that some of these natural cures can supplement medical treatment but none have proven to be replacements.

Dear Shika Mitra,
could you please let me know your contacts?

As my newborn daughter has been detected with EBeta Thal, I wanted to get in touch with you to know more.

thank you and best regards.

I have messaged you with Shikha's email address. She has long experience as a parent of an HbE beta thal and her daughter has done quite well. Be patient, as Shikha may not be online regularly.

Enjoy your visit Kathy!

Thank you for those words of wisdom Shika Mitra.

Sharmin